Patient Voices.
Find more patient stories on The Dysunderstood Podcast.
Finding New Strength
Kate's life was transformed overnight, suddenly battling a mysterious illness that led to her join our community. Despite the drastic change, Kate remains hopeful, finding strength in the chronic illness community and participating in research, as she navigates this new, challenging phase of her life.
Embrace the “I don’t Know”
Cory shares her story, detailing her how life drastically changed last year when she went from being healthy to being severely ill, with fluctuating symptoms and limited energy. She encourages both patients and providers to embrace the uncertainty, hold onto what is certain, and continue to look for answers.
Belonging.
Allison recounts her journey to an ME/CFS diagnosis following an infection. She emphasizes the challenges of living with a chronic illness like CFS, the need to monitor symptoms, and the importance of finding a balance between self-care and pursuing fulfilling experiences.
Swimming Upstream
Sam opens up about health challenges that disrupted her life as she knew it. She navigates uncharted waters, looking for answers and support, determined to find a diagnosis. As a Stanford swimmer, Sam is motivated to get back in the water, learn to manage her conditions, and share how her experience has changed her perspective on life.
Purposeful.
Ally's story is a journey of self-discovery and adaptation. After contracting COVID-19, her life took a drastic turn as she struggled with lingering symptoms that eventually led to a diagnosis of POTS. Through her journey, Ally learned to let go of her long-term perfectionism and embrace a new way of life that accommodated her health needs. Despite the challenges, she continues to move forward, taking things one day at a time, and finding joy and fulfillment in the things she can do.
Keep Moving Forward.
Christine Reed, author and adventurer, openly reflects on her journey- a beautiful one- that includes a POTS diagnosis, pushing through discomfort, and refusing to be held back from what she enjoys. Despite the diagnosis, she refused to let it define or confine her and continued to run and hike, using it as a means to feel better physically and mentally. Christine inspires others by sharing her story and prove that people with these conditions can achieve great things, and they get to choose their own measure for success and enjoyment in their own life.
Life has changed…and so have I.
Alex offers a candid and personal account of her health journey. She shares her experiences of navigating life changes, overcoming health challenges, and the growth and self-discovery that came with it. Alex's reflections provide insight into the transformative power of perseverance, as she demonstrates how her journey led to a newfound sense of pride and appreciation for her body, mind, and evolved spirit. Her story serves as an inspiration and a reminder of the positive outcomes that can come from adversity.
One Step at a Time
Cailyn, a former teacher, opens up about the learning process she has undergone as she navigates health challenges. She advises patients to stand up for themselves, lean on others, and take it one step at a time.
Seven Years of Searching.
Olga bravely opens up about her seven year journey to a diagnosis. She shares about the real, frustrating encounters that she had with medical professionals that were supposed to be there to help her, but unfortunately, left her without hope or answers. Regardless, Olga shares her newfound gratitude for the little things that are often taken for granted.
It’s Okay to Have a Meltdown
Ella shares about a recent emotional moment she had after injuring herself during a workout. This moment made her remember that she is grieving her past self and reflects on the importance of grieving moments in her healing.
In That Moment, I Was Free.
Grace dives into the story of navigating her evolving identity as someone who developed a chronic illness as a young adult. She shares about the grief she experienced with the loss of her sport. Like most of us, Grace still has healing to do, but she celebrates her progress and finds solace in the new life she has created for herself.
Awareness is the Answer.
Jackie courageously shares her journey to diagnosis, that spanned multiple decades. She continues to fight for her health while also caring for her beautiful family. Jackie also openly shares her experiences and challenges as a mom with Ehlers Danlos Syndrome & POTS. Her strength and endurance is inspiring, and she reminds us all to trust our intuition when it comes to our health.
Look How far I’ve come
Alexa joins the Dysunderstood author community by sharing her progress and reflecting on the challenges she has faced. She celebrates her achievements and provides a great reminder of how important it is to be proud of how far you've come.
Mental health and Dysautonomia
Corri returns to share about the mental health side of living with chronic illness. She explains how grief plays a role in the recovery process and hopes that sharing her experience can help those in the dysautonomia community.
Hope in Healing.
Johanna generously shares her entire journey with us, looking back on many years that led her to long COVID and chronic fatigue. Johanna shares how her belief in her ability to heal played a large part in achieving meaningful healing. She also provides advice that she feels is helpful to share with patients, providers, and the greater community.
Dancing with Dysautonomia.
Corri boldly expresses her love for dance while sharing how she has navigated undiagnosed health challenges that have affected many areas of her life. She has grown to proudly advocate for what she needs and shares her experience with POTS in order to help others that may be fighting an invisible battle too.
Our Partners.
I want to take a moment to thank our generous partners for supporting and believing in the message of dysunderstood.
I Wouldn’t Change a Thing.
Daniela Kerr vulnerably shares everything she went through to get where she is today. She candidly discusses her challenges with healthcare professionals, her newly discovered neurodivergence, and how her perspective has changed through her healing process. A must read/listen!
I Can Get Through Anything, Big or Small
Zack LaBar opens up about his experiences leading up to his dysautonomia diagnosis. He shares how he has learned about himself and his ability to push through tough circumstances. He encourages us that resources, like Dysunderstood, are available if you are willing to look for them.